Mother With Dementia 'Warehoused,' Daughter Says

CBC

The daughter of an 84-year-old Calgary dementia patient is speaking out about how her mother was “warehoused” in acute care hospitals for almost a year, because she couldn’t get long-term care in a public or private facility.

“It’s been horrific for her,” said Dallas Diamond, whose mother Margaret was admitted to the Peter Lougheed Centre on Dec. 12, 2012.

She was taken out of hospital briefly in March, then admitted again, to Foothills Medical Centre, Alberta’s largest hospital, all while her daughter tried in vain to get her mom into a long-term care bed.

“No one should have to live like that in their final years, absolutely no one. Especially in this country.”

The elderly woman has one of the more difficult forms of dementia to manage.

“All I want to do is find my mom a loving, supportive place to live,” said Diamond. “The system is so broken. It’s broken beyond belief. It just doesn’t work.”

Diamond said her mom spent much of the initial few months, while she could still walk, strapped in a geriatric chair in hospital hallways.

She said Peter Lougheed Centre staff had to put Margaret in the hallway, day and night, because her mom is very active and "busy” and couldn’t be left alone in her room.

Kept restrained in hallway

“Initially she was kept in the ‘geri-chair’ as a form of restraint. They don’t have enough staff. She would want to wander into places that in a hospital she shouldn’t be in, and they didn’t know how else to control her,” said Diamond, who added her mom is no longer mobile.

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Government statistics show Margaret is one of thousands of Canadian seniors with dementia living out their final months in acute care hospitals unnecessarily, at a huge expense to the taxpayer.

Experts say there aren’t enough long-term care beds and caregivers to look after dementia patients properly, especially in the most severe cases.

“It’s heartbreaking. She’s just been warehoused," said Diamond.

“It’s loud. It’s noisy … and she just doesn’t have any consistent care. She doesn’t have a life. She just sits in a hospital room or by a nursing station in a chair all day. Except when we have the companions go in to visit with her or unless I go in and visit with her."

Diamond said Margaret received better care at the second hospital than the first, because Foothills has a ward specifically for dementia patients awaiting transfer.

Margaret has been designated "MDE," a category for patients with the most difficult types of the disease. Alberta Health Services said patients such as Margaret wait an average of 6½ months to get placement in Calgary's 22-bed MDE unit.

They are among an estimated 60 dementia patients currently in hospital waiting for long-term care beds, in Calgary alone. Unlike Diamond’s mother, most patients are placed within 30 days, Alberta Health Services said.

“I have been fighting so hard and so long to get her a home, because this is not what she would have wanted. This is not what she wants,” said Diamond.

Private facilities tried first

Margaret and her husband, Boyd, who was an RCMP officer, initially moved into a private, for-profit seniors facility in June of last year, after selling their home.

Margaret had mild dementia then, so her daughter said they chose Symphony Senior Living, which promises care for seniors at various stages, including dementia patients as they decline.

Symphony’s website says it is “Calgary's premier retirement residence where you can select the style of all-inclusive living that best meets your needs.”

“They thought it was the one-stop shop and the solution to everything. And it was the beginning of the nightmare,” said Diamond, who added her parents initially paid $6,000 a month to live there.

Boyd died in September and Margaret’s condition deteriorated quickly. Symphony’s CEO Lisa Brush told Go Public it suggested the family move her into their dementia unit right away, but Diamond said she felt it was too early for that.

"She was grieving, and nobody seemed to really acknowledge that," said Diamond.

A visiting doctor then prescribed Margaret an anti-psychotic drug called Seroquel, to calm her down. Diamond objected, because Health Canada has warned Seroquel may cause sudden death in dementia patients.

“Symphony administered one dose of the medication before Dallas requested it stopped. Seroquel is a commonly prescribed medication used to ease the symptoms of Alzheimer’s and dementia,” said Brush.

Soon after that, Margaret was found by staff wandering outside in the middle of the street.

Because it no longer had available rooms in its dementia unit, Symphony then told Diamond she would have to stay with her mom, pay for extra caregivers, or take her mom to hospital, for her own safety.

Money not enough

“More money does not mean more care. It just means you pay for a really nice apartment and you get really nice meals. It doesn’t mean you get any better care,” said Diamond.

Diamond then moved her mom to another private Calgary facility, McKenzie Towne, which has recently come under criticism for leaving residents in soiled diapers for too long.

After a month, that facility sent Diamond’s mom straight to hospital — telling her daughter not to bring her back — also because staff couldn’t manage her.

“Our thoughts are with this family,” said McKenzie Towne spokeswoman Cathy Metson. “This individual was a resident in our home for a short period of time. However, she required a higher level of care than we were able to provide.”

“If you are healthy and you are wealthy they want you. But the minute you start to step out of what they feel that – the bare minimum that they can provide – you are out the door,” said Diamond.

Her mom then spent most of the last year in the two hospitals, which cost Alberta taxpayers $732 a day, more than $250,000 in all.

The family also paid $3,500 a month, for privately hired companions to help care for Margaret in hospital and a government fee for her care, because she is deemed a long-term care patient.

“The absolute pressure and the stress you go through this with your family the way the system is today, is unbelievable,” said Diamond.

Couldn't cope at home

Diamond said that at one point she brought her mom home, but simply couldn’t cope. She said her house isn’t safe, with steep, slippery stairs and a small bathroom.

She said she couldn’t lift her mom in and out of bed and the bathroom. She also felt that, even if she hired daytime caregivers, she couldn’t give Margaret the constant care she needs, because her mom often doesn't sleep at night.

“I would just stay awake, because I was just always straining to hear if she was getting up. My husband would tap me and say ‘Your mom’s up, your mom’s up, your mom’s up.’ And so it was just a really dangerous situation all around and not good for anyone’s health."

"There are just many resources that can only be given in a long-term care facility, and not in the community," said Mimi Lowi-Young, CEO of the Alzheimer Society of Canada.

The society is predicting a “rising tide” of dementia, with the number of cases in Canada expected to double in 25 years. It is urgently calling on Ottawa to put money and effort into a national plan to get enough caregivers, facilities and other supports in place.

“We will continue to have major impact on the economy, on the social fabric of this country, if we don’t start putting the necessary initiatives and pieces in place to really make lives better for the individuals, people with the disease, and their families,” said Lowi-Young.

She said housing dementia patients in acute care is a national problem, worse in some places than others. In Ontario alone, last year, the auditor general found there were 2,000 people waiting in hospital for long-term care beds, most of them seniors.

G8 summit on dementia

Federal Health Minister Rona Ambrose will be among G8 leaders meeting in London this week for a summit on dementia.

“Since 2006, our government has invested over $730 million in neuroscience research. We also created the Brain Canada Foundation and invested $100 million to fund research into the treatment of brain diseases, including Alzheimer’s,” said a statement from her office.

“Our government will continue to work with groups like the CMA and the Alzheimer Society to ensure we are making a difference in the lives of those who suffer from dementia.”

As for Margaret Diamond, two days after Go Public started calling Alberta Health Services about her case, her daughter said she was moved to the specialized unit for dementia patients in Calgary.

“If they set things up properly, it would actually be less of a drain on the system financially than what it is now,” said Diamond.

“Having people funnelled through acute care beds is an atrocious expense to the government. It’s ridiculous.”